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Thread: How do they know?

  1. #11
    Mommafirst
    Guest

    How do they know?

    If he has symptoms, an elevated sweat and one gene they could very well diagnose and assume an unknown mutation at this point. They could also call it CRMS -- Cystic fibrosis trans regulator Related Metabolic Syndrome. This seems to be a "holding tank" for those that don't have enough to be diagnosed but they still want to watch and see what happens.

  2. #12
    Mommafirst
    Guest

    How do they know?

    If he has symptoms, an elevated sweat and one gene they could very well diagnose and assume an unknown mutation at this point. They could also call it CRMS -- Cystic fibrosis trans regulator Related Metabolic Syndrome. This seems to be a "holding tank" for those that don't have enough to be diagnosed but they still want to watch and see what happens.

  3. #13

    How do they know?

    Ok thank you for that, I am there on Thursday so will see what they say, last time he said he did'nt want to diagnose 'yet' and that was before they knew he had Delta F508 just its all so confusing I don't know what to make of it.

  4. #14

    How do they know?

    Ok thank you for that, I am there on Thursday so will see what they say, last time he said he did'nt want to diagnose 'yet' and that was before they knew he had Delta F508 just its all so confusing I don't know what to make of it.

  5. #15
    Junior Member
    Join Date
    Apr 2012
    Posts
    2

    How do they know?

    Its a scary thing to go through with your kids. And its complicated. Ask for some literature that you can read on your own time. I found that very helpful. My 4month old daughter has the df508 and p.133k.

  6. #16
    Junior Member
    Join Date
    Apr 2012
    Posts
    2

    How do they know?

    Its a scary thing to go through with your kids. And its complicated. Ask for some literature that you can read on your own time. I found that very helpful. My 4month old daughter has the df508 and p.133k.

  7. #17

    How do they know?

    If you want to watch this video, it is very helpful. It's a bit basic, but basic is the best place to start!

    http://www.nlm.nih.gov/medlineplus/tutorials/cysticfibrosis/htm/_no_50_no_0.htm

    CF is confusing and there's a LOT that is still unknown about it. I've been "exposing" myself to CF info for a long time and am constantly amazed at the complexity of it. Due to the effects that CF has on so many body systems and the dizzying amount of different mutations and gene combo's that there are, I really don't think that all will be known about CF anytime soon, if ever.
    I'm sorry. I know it's scary, but humans have a magnificent way of learning to cope with even the most daunting situations, as most of us have on this site. It doesn't make it less scary, but knowledge alleviates some of the anxiety.
    Anyway, good luck with your son and good luck with your search for answers.


    A. N. Ard

  8. #18

    How do they know?

    If you want to watch this video, it is very helpful. It's a bit basic, but basic is the best place to start!

    http://www.nlm.nih.gov/medlineplus/tutorials/cysticfibrosis/htm/_no_50_no_0.htm

    CF is confusing and there's a LOT that is still unknown about it. I've been "exposing" myself to CF info for a long time and am constantly amazed at the complexity of it. Due to the effects that CF has on so many body systems and the dizzying amount of different mutations and gene combo's that there are, I really don't think that all will be known about CF anytime soon, if ever.
    I'm sorry. I know it's scary, but humans have a magnificent way of learning to cope with even the most daunting situations, as most of us have on this site. It doesn't make it less scary, but knowledge alleviates some of the anxiety.
    Anyway, good luck with your son and good luck with your search for answers.


    A. N. Ard

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